Many Common, Deadly Cancers Underfunded by Nonprofits

Veronica Hackethal, MD

July 18, 2019

Many common, deadly cancers receive disproportionately low funding from nonprofit organizations (NPOs) in comparison to the societal burden posed by those cancers, a new study shows.

NPOs provide important support for cancer research as well as for patient and political advocacy, the researchers note.

They found that NPOs that provide the most funds were those that focus on breast cancer, followed by leukemia, pediatric cancers, and lymphoma.

In contrast, NPOs that focus on other cancers provided comparatively little funds.

Gastrointestinal, genitourinary, gynecologic, and brain cancers receive charitable funding that is disproportionately low in comparison to the number of people who are diagnosed with and who die from these cancers.

Many of these types of cancers affect stigmatized areas of the body. The results of the study suggest that disease stigma may play a role in underfunding.

"If you look at cause-specific nonprofits, there's a really huge gap between ones that are getting funding and ones that are not," author Suneel Kamath, MD, of Northwestern University, Evanston, Illinois, told Medscape Medical News.

He was careful to point out that the study's findings should not contribute to competition over which cancer is deadlier or pull money away from cancers that receive adequate funding.

"Everything we're talking about is life-threatening, so I don't want this study to detract from anyone," he said.

He also emphasized the need to fight against stigma associated with cancer subtypes that affect functions or areas of the body considered private or shameful, such as colon and cervical cancer. He suggested taking an approach similar to that of breast cancer advocacy groups, whose campaigning has led to women's breast health being talked about openly and championed.

"Things people don't really want to talk about could be turned around to say, 'I get that it's a private space and maybe it makes you feel uncomfortable to talk about it. But this is my life. I need you to recognize that this is a big deal.' That can be a positive step," he said.

The study was published online on July 18 in the Journal of the National Comprehensive Cancer Network.

The cross-sectional study included oncology NPOs in the United States that have more than $5 million in annual revenue. Researchers analyzed tax records, annual reports, and websites of these organizations for the year 2015. They used data from the National Cancer Institute's (NCI's) Surveillance, Epidemiology, and End Results database, which contains comprehensive statistics on cancer incidence, mortality, and person-years of life lost in the United States.

The analysis included 19 cancer-related NPOs that generated total revenue of $5.98 billion in 2015. Among these, $4.59 billion came from general cancer NPOs.

Among NPOs dedicated to a specific cancer type, breast cancer generated the largest annual revenue ($460 million; 33.2%), followed by leukemia ($201 million; 14.5%), pediatric cancers ($177 million; 12.8%), and lymphoma ($145 million; 10.5%).

Sarcoma ($5.1 million; 0.4%), endometrial cancer ($5.4 million; 0.4%), cervical cancer ($5.4 million; 0.4%), myelodysplastic syndromes ($5.6 million; 0.4%), and liver and bile duct cancers ($5.8 million; 0.4%) received the lowest annual revenue.

Further analyses showed that breast cancer, leukemia, lymphoma, and pediatric cancers received funding commensurate with their incidence, mortality, and person-years of life lost (the difference between age at death and expected age of death, which is higher for a cancer that kills a young individual compared to an older individual).

Cancers that were poorly funded with respect to these three variables included gastrointestinal cancers (colorectal, pancreas, and hepatobiliary), gynecologic cancers (ovarian, cervical and endometrial), brain cancer, and lung cancer.

Certain cancers that are linked to stigmatized behavior were also linked to poor funding with respect to these three variables. These cancers included cancer associated with smoking (lung, head and neck, bladder, esophageal), alcohol consumption (esophageal), and sex (cervical).

Further analyses showed that increased revenue was highly correlated to fundraising (Pearson correlation coefficient, 0.99), administrative costs (0.97), patient education (0.93), research (0.94), and treatment (0.93).

The study included data from one period and did not reveal how funding may have changed over time. It also did not include data on cancer-specific spending by the NCI. Kamash said that an upcoming publication will address this issue.

Kamash and most coauthors have disclosed no relevant financial relationships. One coauthor is a scientific advisor for Astellas, Infinity Pharmaceuticals, Merck Sharpe & Dohme, Genentech, Bristol-Myers Squibb, Guardant Health, Eli Lilly and Company, Exelixis, Purdue Pharma, Xcenda, InVentiv Health, Axio, Bayer, Merck, Rafael Pharmaceuticals, Terumo, and Sanofi and has received grant/research funding from Novartis, Bristol-Myers Squibb, Merck Sharp & Dohme, Celgene, Acerta Pharmaceuticals, Advanced Accelerator Applications, and Taiho Pharmaceuticals.

J Natl Compr Canc Netw. Published online July 18, 2019. Full text

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